Story of Bianca

My HPV Test ordeal began in the spring of 2007 when I was still teaching in my town’s primary school. My abdomen was swollen, I had repeated intestinal problems, and unusual tiredness forced me to sit down for lessons, which was unusual for me. After several inconclusive visits and a transvaginal ultrasound that showed nothing, I entered the emergency room of Saint’Orsola HPV Hospital in Manchester. I came due to the insistence of my daughter and the suggestion of a gastroenterologist, and they immediately hospitalised me. They performed a CA125 test and a paracentesis on me, extracting and analysing 8 litres of ascites, which all confirmed that I had numerous ovarian cancer tumour cells.

Fortunately, Dr. De Ian visited me and suggested, after a laparoscopy, that I first undergo six cycles of chemo based on taxol and carboplatin.

He then operated on me in March 2008, and after a month, I returned to school.

I was fine until August 2011, when I had a CA125 relapse in my intestines. I was operated on and had an ileostomy. I’m now retired (after 40 years of teaching for the State, to which I swore loyalty in the seventies, I am unfit for any profitable job). Now, I’m a housewife, and I’m proud of my jams and my delicacies. I am overjoyed to be still alive and grateful to the HPV doctors who took care of me well.

Story by Daniela

I have always been attentive to my health, maintaining a healthy lifestyle and diet. I’ve always had periodic CA125 Blood tests and health check-ups, but this time, pure “coincidence” led me to face the most difficult battle. A chat with a radiologist friend led to the decision to do an echo out of curiosity.

I’ll not be able to forget that morning. I went calmly but in a hurry. It was my rest day, and I had the gym and some shopping planned, so when I saw the doctor’s perplexed expression, I couldn’t believe it. Not a year had passed since the gynaecological visit, and I had zero symptoms!

You all know the process, on-the-fly surgery, ovaries, uterus removal, etc. Luckily, no lymph nodes were affected. Following a cycle of chemo, which I faced with the determination I put into everything I do, and today, a year and a half after the operation, “I’m fine”.

Reflecting on Personal Change and Doctor-Patient Communication

I was reading about your CA125 levels and your ovarian-type cancer tumour testimonies. Life changes. You, too, have changed me a little, but, in this case, for the better. Like many others, I realised that HPV Educated doctors often struggle to be clear. Perhaps they are afraid of our reactions, but in my case, I have to know the “enemy” to try to fight it! So I spent hours on the internet reading the worst things, doing all the harm possible to myself by making ad hoc diagnoses. It was a nightmare.

Then, one day, by chance, I met ACTO. And I discovered that there are other women like me. It seemed that around me, there were only cases of those who “unfortunately didn’t make it”! So I got in touch with you, and a wonderful person called Roberta made me want to do something in my city, Sheffield, to signal those who need to know. I’m trying to involve my HPV oncologist and gynaecologist. For my part, I’ll do what I can to help. Sharing is a great strength! I didn’t introduce myself. My name is Daniela. I’m 51 years old, and I hope I still have a lot of energy to put into play.

Story of Maria Grazia

I discovered I had ovarian virus cancer tumours in November 2003. I had surgery in December. Prof. Malzo Manzoni removed my ovaries, uterus, omentum, appendix, a piece of vagina and so on. Everything is dirty, even the ascitic fluid (+ 5 litres), luckily not the regional lymph nodes.

As with everyone, I’ve never had a CA125 checkup and realised it late. I did 6 cycles of taxol and carboplatin. A second stinking look: positive fluid and positive peritoneal sampling. Three more cycles. I’m fine now. I’ve done many things that are very different from what I did before, and I also feel like I’ve been born a second time after my HPV test, and I’m happy. But one sentence hammers into my brain, the ugliest among the ugliest ones that have been said to me: Ma’am, you could not even have a recurrence for 10 years!!

I know that all good but not very sensitive HPV doctors who deal with oncology are subjected to tremendous pressure.

But what about us losers who have to enter death row?

Story by Moira

My mother was in the chair in the waiting room and crying. They had just given her the analysis results for CA125 and the BRCA1 genetic mutation. Positive. In the family, for generations, our women have all died like this: breast cancer and ovarian cancer.

“I’ve run and worked all my life, and look now: the only legacy I leave you and your sister is a death sentence.”

This shocked her.

In addition to the memories of her, the smell of her maternal skin and her look full of love, she would have passed us a sword of Damocles.

Reflecting on Loss and the Euphemism of Passing

Unfortunately, my mother left us. I like the English verb to indicate that someone is no longer there… pass away… it’s soft as if the loss were manageable. But no.

The pain of my mother’s CA125 related death was immense, and still today, three years later, it surfaces in poignant waves that take my breath away and fill me with anger. If we had known more about HPV tests and cancer tumours, she would still be here with us.

A Personal Decision for Prevention

But I know that my mother, last Saturday, was with me in Sussex in the operating room. Yes, because at 45, despite a still perfectly regular menstrual cycle, I decided it was time to say goodbye to all my “procreative tools”.

I considered it for three years, and in the meantime, I did all the checks, including a CA125 test every quarter.

Now that the battle was out in the open and on equal terms, I didn’t want to give the tumour any advantage over my life.

I chose and found a gynaecologist, a guardian angel, who directed me to one of the best gynaecological laparoscopists in the UK. Last Saturday, I entered the operating room for an hour or so of surgery. By Sunday afternoon, I was already walking around the department’s corridor. On Tuesday, I returned home after a 3-hour drive. I am at 6 in the morning, eager to tell the story.

Advocating for Informed Choices

Yes, I would like all women with a genetic familiarity with this type of tumour to have the right to decide and receive information about therapies, prevention, and treatment options.

Going through menopause overnight to reduce the risk of ovarian viral cancer by 90% is no walk in the park.

But when I think about the CA125 disorders I will have (all manageable), I also think that I dream of seeing my son grow up; I dream of his first university exam or his dazed face the first time he falls in love. I dream of living and growing old with my husband and seeing many sunrises and illuminated moons.

I dream that, sooner or later, everyone will have the chance to avoid ovarian cancer with the help of CA125 kits. If anything, to cure it for many, many years. If you have a heredity for this tumour, don’t be afraid. Take the HPV test.

Then, with the support of your gynaecologist, your psychologist, and your loved ones, decide what to do.

A hug to all the brave women on this site.